Tips Sheet

Liz Moench

Apr 12, 2010
by Liz Moench


1) Put yourself in the shoes of the patient and ask the question, “What will it take for me to keep coming back for study visits?”

2) What qualities would I (the patient) look for in my study staff based on how they greet me, how I am treated during visits, how comfortable I feel in asking questions and how much they value my study participation.

3) Consider the role of a care giver or family member who may be present at study visits either as a companion, a rater (for cognitive assessments for example) and / or a key player in ensuring the study subject’s compliance to protocol.  Many times caregivers / companions feel they are invisible to study staff when they are not acknowledged but they are critical to retention success.

4) When developing a patient retention program for pediatric studies, consider the age of children at the study onset vs. the age of children at the study conclusion.  Retention materials must evolve at an age appropriate level as the study progresses.

5) Expectations vs. experiences: Ask patients what they would like to get out of the study at the time they enroll.  Make a note of these expectations in the patient file and check back throughout the study to ensure that their experiences are consistent with their expectations.  If expectations at the time of enrollment are unrealistic, a discussion should be held since a misalignment of expectations and experiences will result in patients withdrawing from the study.

6) Patients are motivated by different things and motivation to join a clinical trial is a very individual thing.  For some patients it’s altruism.  For others it’s access to medical care, a new treatment option, more medical attention or financial reimbursement.  Regardless of the reason, a consistent message at each study visit that reinforces 1) the purpose of the study, 2) the importance of participation and 3) thanks them for their commitment are critical steps in the retention process.

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